Thursday, October 27, 2016

The findings from the scopes yesterday were not as awesome as what we wanted. They fall into three categories: the good, the bad, and the ugly.

The Good
From the GI standpoint there is nothing to worry about and everything looks great. His diet of carbohydrates and dairy can continue as normal, which it did right as we got in the car to leave.

The Bad
His airway is not awesome it is not functioning at 100% and this problematic, at least it is not life-threatening or handicapping; if it were we would not have been allowed to come home. His trachea is collapsing more than usual when he breathes as well as the the portion just below the the trachea when it first enters the lungs.

The Ugly
His old trache site is the main cause of the problems. It is "s shaped" and not super strong and there is really only one way to remedy this. He gets the opportunity to have another reconstruction of his airway, where they graft more cartilage from the ribs into the airway. This time it will only be one graft on the front of the airways but it is still major surgery.

We will be in cincy for 4 weeks and in patient for 5 - 10 days. He will intubated for a time and we pray that they won't have to do a trache again, but it can happen. He will have an feeding tube in the other nostril. I think we may try to have this happen soon more so than later.

WHEW.....my thoughts when the doctors said this to me were all over, it felt like taking a step backwards. Like they said though, if it was life-threatening we would not be back here. We are praying that God reveals the plan to us so that we can have peace with our decision on when to get the surgery done and P stays healthy so that we can get it done when scheduled.

Tuesday, October 25, 2016

Day two went off with out a hitch. P did go to bed super late last night but did sleep until 9 today, so that made up for it. We were at the hospital by 10:15 to get set to go under for a CT Scan, although I was not convinced that he needed to be put under. Other than the fact it would eat up more time, I hate to put him under if it is not needed. After consulting with nurse and the child life specialist showed him what to expect, we went back for the CT without sedation. He did great and he held his breath and followed directions to make it a success. For the CT scan we needed two things examined, his lungs and temporal bone. We left there and went to eat finally.

The temporal bone scan is for the Docs in KC to see of the ear bone is thick enough to start to mount his hearing aid.

After the CT scans and eating, we went to the Cincy fire museum. He loved it and it was cool to see the history. I know my grandfather, who was a volunteer fireman, was smiling down to see the fun P was having. He was not able to climb on the trucks like we could when we were kids but he loved to see the tools. We were then going to go to the zoo, but I remembered we had another office appointment. On the way back to the hospital we made the pilgrimage to Graeters and P had chocolate choclate chip and I had salted caramel chip (new) and mocha chip.

We then saw the GI doc and the Pulmonologist. They will see him tomorrow. The GI will go an EGD and check acid reflux, take some biopsies, and wash a little out of the stomach and esophagus. The Pulm will look in the upper airway and down to the lowest depths of his lungs. He will do a lavage of his lungs and gather fluid to look for any anomalies and see why he can have persistent coughs.

The day ended with us going to a park and then intending to go the river front areas to walk around, this was changed when he fell asleep on the way there. We came back to the hotel so he could drive his new RC car.

Tomorrow is the bronch with Rutter and company. We may need to do a clinic visit on Thursday or we get to come home.

He thought it should have icing and sprinkles instead

First meal of the day chocolate muffin

Following directions

So brave!

Pumping Water

Like the cows in KC, cincy has a connections to pigs. I will have to find out why.

Monday, October 24, 2016

We got the first day of testing out of the way and P was a trooper. Since he was due for an esophagram at 9:30, we are in radiology by 9 and he could not eat until we got back in the room for the X-ray. He did great listening to the directions from the Doctors. P got a kick out of the Dr's because one had a Captain America patch on his lead suit and the other Dr's name was Preston. So P thought it was a game like "Simon Says", except it was "Big Preston Says". He got the pleasure of drinking Barium, which is thick, white, milky, and tastes gross, and the Dr's got the pleasure of watching it travel down to his stomach and then watch it move into the small intestines. He rolled left, right, on his back, left again, right again and won the game of "Big Preston Says".

The best news of the day came in the form of being able to move his swallow study, the vertical portion of the party in the X-ray, up so that we did not have to return later in the same day. We got that out of the way and he rocked it too. There was one little glitch and he had to repeat some steps and still did well.

We spent most of the day at RMH playing, since we are only able to stay for the one day. He basically walks around like a mayor and thinks he knows and owns the whole place. "Hey dad, let's go to this play room, you remember this one it has Jake's ship." I am not sure how he remembers it. We saw lizards out on the play ground too and he was sure to report it to the staff at the front desk.

We have checked into the hotel and are now in close quarter living for the remainder of the time here. I think it will be Thursday when we are able to head home after a clinic visit with the ENT Team. Tomorrow it will be operation "not get cooped up" after we head out for a CT scan, which I think he can sans anesthesia. We will have to see about that though.

No real results today but all the people looking at the scans said they looked good.

Below are some pics from today and yesterday.

All my bags are packed and look who made the trip Leo and Bumble

Costumes to checkout for Halloween at RMH

New RC car from RMH, man this place is awesome, and P said Reid will FREAK OUT!

Sunday, October 23, 2016

Today P and I, Tim, head off for the much delayed return trip to Cincy. The overall goal being to get to the bottom of some persistent coughing and gagging. Although, we think his love affair with chocolate milk plays a huge role in the gagging. We have a battery of assessments planned and hope they all go off with out a hitch, especially since he has not been 100% for the last few weeks. Monday kicks off with CT scans, Tuesday is video swallow studies, and Wednesday a scope of airway, upper GI, and lung washing. We get to add a GI doctor this time around to see if he has a tracheal esophageal fistula, which is a tiny opening between the tube that allows for air and liquid to pass below the epiglottis. Sorry for the anatomy lesson, but that is what we learn.

We will keep you all posted as to the goings on and the misadventures. P has movies to watch and I can still listen to the Chiefs game. I will let you be sure to offer full reviews of the Graeter's Ice Cream Flavor of the month as well.